Here is a letter which describes dysesthesia. Although the sensation differs in distribution, severity, and evoking stimuli, this description captures many of the features which are common in surveyed CP subjects.
This is an explanation of why I chose the term, “fat” burn as a description of dysesthesia. It is just an attempt to put dysesthetic burning into words. The word “fat” comes from a description I once heard of synthesizer sound. It means expansive, spreading, flaring, widely distributed, and of more than one quality.
Primarily, the burn feels like an acid on my skin, like the time a lab partner spilled nitric acid on my hand when I was in Chemistry. Except it is not on top of my skin, rather just the slightest distance under it, maybe two or three millimeters. They tell me this is where the nerve endings are, whatever that means. The actual surface of my skin seems to have vanished in the numbness, and so I don’t really have a surface, in my perceptions. The zone of burning takes the place of a skin surface, which my brain somehow thinks is there, although I cannot feel it from the numbness. I have a place for the surface in my mind. I just can’t feel it. The perception of skin surface is very slight anyway, and it is one of the sensations I no longer have.
Again, I chose “fat” because I was thinking of a synthesizer. If you hear a very one dimensional tone, it is “thin”, whether or not it is loud. But if the synthesizer adds in a lot of enrichment, harmonics or distortion or something, the tone takes on the very “fat” synthesizer sound. This extra something makes it different. The sound is electronically processed so as to alter its nature and quality so that it is no longer an organic sound.
Dysesthetic burning has a lot going on, which reminded me of the fat synthesizer sound. It sort of spreads over the sensorium like a broad experience rather than a “thin” pain, so that is why I use the word “fat”, sort of like a very bad burn becomes “fat” as it sets in, after the initial injury is long past. It really blankets you, but as sort of a space or zone of burn afterpain, not a defined place of burning. The doctor calls this “lacking discriminative features”.
If you got hit by a bullet, it would kill you, but if you took the bullet and spread it out into a powder, it would occupy more space, and might knock you over when it hit, but wouldn’t kill you. In the same way, the acid burn feels as if it is sprayed on you, with an unclear margin of just where the burning stops and starts. Then you just have to sit there. You can’t wash it off, you can’t run. What changes is not the burn, but you. The burn washes some of you away, your identity, rather than your washing the burning off.
The burning is that way, generalized. If it were concentrated in one little area, it would be a real killer, but since it is spread out over the whole skin, its impact is in the totality of it. It really rocks you, takes you over, but it isn’t this pain in one, small, well delimited place.
Others with dysesthesia already know what I mean. Many of them probably have a better way of explaining it. Some others may not have really thought about it.
I read from an article here about a doctor who called it a “glow of pain”. That is the same idea, and it glows pretty brightly, like a bad sunburn on the first evening. My doctor calls this “second pain”, which means the flare you feel after you pull your hand away from a hot stove. The “first pain” would be the initial touching of the stove, which doesn’t go to the brain, your spinal cord refelxes just jerk your hand back without thought:
Strangely, a cold blast, like the car A/C will bring burning dysesthesia out. There is a spontaneous burning, but it can be made worse, or evoked, with various stimuli, such as light touch or temperature change, but NOT heavy blows. It should be the other way around of course, and the doctor would like it better if we told them hard pushing on the skin hurt more than light touch, but it just isn’t that way. We don’t understand either.
I have the other pains too, pulling, shooting, pins and needles, cramp, nausea with gut distention, and burning with bladder filling. but the dysesthetic burning is weird, unhuman, creepy. it is so unnatural it seems like the pain a dead person would feel if Dr. Frankenstein brought them back to life. The pain has been processed by some disordered mechanism, which throws in things that don’t belong there, like cold or wetness. It makes you want to squirm, wake up from the nightmare, escape and be alive again. We do not claim to be normal, we just claim to be telling the truth. The more you attempt to describe it, the crazier you will sound. Imagine trying to describe a “heavy metal” sound to someone who had only heard birds chirping or humans singing.
We can tell a machine, of sorts, (something robotic that is not subject to the normal operations and “aliveness” of a sensate brain) is making the noise and not a living thing, as we perceive and recognize the hallmarks of living things. it does not feel a part of us. It is too strange. That is what is frightening about dysesthetic burning. It shouldn’t be a pain felt by a living person. We have no place to put it, just as we don’t integrate our car into ourself. It is inanimate, and dysesthesia is an inanimate pain–not subject to human control and the emotional sense of being, although it generates tremendous emotion, and strong emotion certainly can elicit more of it.
I had Capsaicin once, and compared it to CP. If you took the “harmonics” out of the burn, that would be capsaicin. Capsaicin does not produce the wide, fat, expansive kind of burn. It is one dimensional, just a burn. Dysesthesia has this pain distortion thing going on, like a heavy metal guitar distorts sound, so that I told one of my docs it had a “metallic” quality. Oddly, he understood, kind of, since other patients had said something similar. When CP people call dysesthsia bizarre, we mean unnatural and like a machine would feel, not a human.
Dysesthesia is not vaguely different. It is very different. It is not more different than normals DO imagine. It is more differnt than they CAN imagine. We cannot imagine processed pain. Pain is normally has clarity. Dysesthesia does not and cannot integrate with what we know a living being perceives. It is a thing which should not exist in the living world.
A burn is not a normal mechanism of sensation, it is a reactionto something outside, but the loss of normal touch in CP makes this burn us. It comes into us. It is how our brain receives information from the environment. What was always “other” is now our only means of staying in touch with the outside. Lacking sensation, our brain has adopted a bionic pain to supply us with information about movement and touch. We know it is not normal pain. It is as if Pandora’s box has been opened and afflicted us to our souls. We survive by not thinking about the pain, and so may be woefully ignorant about its unhealthy components, since avoiding and not describing the pain is paramount.
The exterior has moved to the interior. It is a hybrid between living sensation and a noxious other. The burn of an acid is somewhat vague in origin, and so is dysesthesia. We are used to pain being a distinct feature, not a muddled one. But dysesthesia is mixed, and unfamiliar, and a construct such as we know is not our nature, nor of any living thing. This makes it very difficult to talk to the doctor. Having it creates too much of an awareness of ourselves as a person apart, and we feel isolated.
The shooting pains are more intense, but are easier to accept, since it feels like the pain a human being might feel. It is very distinct, well localized, and not of an unusual quality. It also responds to medication. The burning pain is none of these things. It is very hard to treat, feels very alien, and causes fear and overwhelming loss of identity. Burning pain is meant to be escaped, but this one cannot be.